In the workshop’s closing session, the workshop planning committee co-chairs Terry Fulmer of The John A. Hartford Foundation and Fernando Torres-Gil of the University of California, Los Angeles, provided their thoughts and reflections on the workshop presentations and discussions and on the future of supporting community living.
Fulmer thanked the participants for bringing their passion, respect, and insights to bear on addressing the workshop’s objectives of identifying how to improve care coordination, discuss policies that catalyze innovation, explore research and policy gaps and needs, and examine innovative models for integrating service delivery and finance. She recounted how Kathy Greenlee told the workshop participants that it was worthwhile to separate attempts to solve the finance challenges of community living from the questions of what services to deliver to those who need them and how to do so; let services lead the way, with the finance models to follow. She also noted that Greenlee talked about business structures and how important it is to think about outputs as distinct from outcomes and said she hoped that the different approaches that are being developed from different perspectives will converge in a manner that will help the entire field move forward. Greenlee also challenged the workshop participants to be validators, Fulmer noted—that is, that they should take the big ideas and push their colleagues in academia and government to test and validate these big ideas in the context of maximizing independence and supporting community living. Fulmer reminded the workshop participants of the data Gretchen Alkema presented showing how unaware
the American public is about the potential economic impacts of disability and aging, both for the nation and the individual, and Fulmer recounted Alkema’s message imploring the participants to use their energy to promote change.
Fulmer discussed two key messages that she said she had taken away from the workshop. One was the need to reframe some assumptions regarding the needs of those with disabilities and older adults in terms of the types of programs and technologies that can help these individuals remain independent and live in the community. The second message was that not only is it inevitable that technology will play an increasingly important role in providing care for individuals with disabilities and older adults outside of the institutional health care setting, but also there is a need to continue to infuse compassion and the human touch into that care. Furthermore, Fulmer said, the need to infuse compassion was relevant to all topics discussed during the workshop, not just technology. She said it was not a question of if compassion should be included, but how.
Torres-Gil commented on how much progress the field has made over the past few years, despite some setbacks, such as repeal of the Community Living Assistance Services and Supports (CLASS) Act. The discussions have evolved and now are more sophisticated and nuanced; they reflect a growing understanding of the complexity, gaps, and needs of older adults and individuals with disabilities. One message he took away from the workshop’s presentations and discussions, he said, was the need to translate the basic conceptual and theoretical research that has already been done and apply it to identify and address those gaps where more real-world work is needed. It is this type of work that will help the field identify ways to scale up the many best practices that already exist in order to serve more people.
In no particular order, Torres-Gil listed a number of issues, some of which were raised during the workshop and some of which were not, but all of which deserve more attention in future discussions of maximizing independence and supporting community living:
- The need to recognize that regardless of an individual’s disability, mobility limitations, cognitive and intellectual disabilities, and chronic health conditions, that individual can remain independent as long as there are others who can help enable that independence.
- The implications of increasing diversity, immigration, and the reality of becoming a society of a majority of minority groups, both in terms of the patient population and in terms of the long-term care workforce.
- The role of unions, collective bargaining, and decisions from the U.S. Department of Labor and the judicial system to eliminate exemption from fair labor standards for adding greater compensation for home care workers.
- The role of adult protective services and the need to ensure protections for older adults and individuals with disabilities and channels for reporting and mitigating abuse, which can be integrated into home and community-based long-term services and supports.
- How to address gender differences, both what to do about the fact that women in the baby boom generation will increasingly be growing older alone and also understanding why men die too soon.
- The value of learning from the experiences of other nations and from pioneering organizations in the United States, such as the U.S. Department of Veterans Affairs.
- How to support the many disenfranchised Americans who may not have loved ones or a support system of family and friends. Whether they are individuals who choose to be isolated or individualistic, whether they are homeless or have mental illness, or whether they are prisoners or former prisoners, there will be many individuals who are alone and will need support.
- The need for caution in over-medicalizing the health care system or any potential home- and community-based, long-term care system.
- The need for caution against “over-professionaliz[ing] our fields and disciplines [so] that only we as expert professionals know the answers and can tell an older person [or] a person with a disability that this is what is best for [him or her].”
- The important role that the private sector, advocacy groups, and foundations can play, and the value of building partnerships with them. They are potential partners regardless of how care delivery systems are reconfigured.
In closing, Torres-Gil called on the workshop participants to be optimistic, but also to be in a hurry. “As one of roughly 78 million baby boomers who have all turned 50 and are now moving toward 70 and the realities, not the myth[s], of aging and longevity, 78 million ornery and pushy and entitled baby boomers, I believe, will finally give us the legitimacy and the capital and the clout” to make the changes that are needed.
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